What It's Like: One family's A-Z journey through Autism

This tower is 4 years total of educational paper work for 2 kids and represents approximately over 300 hours of meetings, evaluations, reading and combing over data….JUST AS THE PARENT

(originally posted 9/2016)

I is for IEP, IDEA and Inclusion.

These three “I” words have forever changed me as a person. If you have a child in special education, you probably just had a shiver run down your spine just by reading those acronyms in print and may be thinking the same thing. All of these things serve as a blessing and a curse to our kids…and also to the educators and administration serving them. Back in the day, the Individuals with Disability Act (IDEA) was enacted to refine and replace what few laws there were to protect children with disabilities within the education system. It was meant to also focus more on the individual rather than on the disability itself. IDEA has been re-written several times since 1990. There are several things it does both in a good way and also in not such a good way:

It provides a free and appropriate public education (FAPE) to all kids regardless of disability at public expense. The key word here being APPROPRIATE. The downside: There is a pretty decent chance that what you and your child’s test scores say and what you know is appropriate will be very different than what the district thinks is appropriate. And most likely because of that other key word….FREE.

Evaluations: This law makes sure that children with disabilities are evaluated in a way that makes sense. We don’t want to use one specific test to decide if a child needs special education services. That way discrimination is prevented and ideally, these evaluations serve as a tool to know exactly what they will need educationally. The downside: Evaluations are only as good as the people trained to administer them….and only as good as the educator who can recognize an issue in the first place.

Individualized Education Program (IEP): These are legal documents that establish goals, accommodations and modifications to the general curriculum and access to qualified professionals to ensure that a child with a disability is learning at the right pace and to his ability within their environment. These plans level the educational playing field for those with a disability. The heart of special education. There are 13 categories under which a child may qualify: specific learning disability, speech and language impairment, blindness, deafness, hearing impairment, visual impairment, orthopedic impairment, traumatic brain injury, autism, multiple disability, other health impairments, emotional disturbance, intellectual disability, The downside: Because they are legal documents and may be audited and are monitored on a quarterly basis, educators may have a very high self-preservation incentive to make certain your child is meeting his goals….at least on paper. The more savvy the parent, the more tricky this can become.

Least Restrictive Environment (LRE): This ensures that your child is placed in an environment that meets his needs as independently as possible in an educational setting that is appropriate for him. The goal is to work toward the LRE. The downside: For those of us with kiddos with Autism, this is not always cut and dry. Especially those who are cognitively intact but perhaps have a language impairment or another issue which may stand in the way of independence. An emerging issue in the field is for those kids who are considered “twice exceptional” such those who are intellectually gifted but with severe behavioral issues. And what does “least restrictive” mean anyway? My kid who needs 1:1 to learn can totally sit in a regular classroom to do that. However, I believe my district interprets LRE to mean that he be in a contained classroom without a 1:1 because then he might have more physical independence in that room. Who is right?

Protections for your child…..protections for you as a parent: Because of IDEA, there are procedural safeguards in place to make certain that your child is receiving the services the school says they will provide and a protocol to follow if you believe they are not. Additionally, these protections allow for parent participation and child participation as an equal member of the child’s school team. The downside: Let’s face it…if you are not an educator…or even know where to go to get what you need, you will never be an equal member of your child’s team. Procedural safeguards and parent participation are ultimately only as good as the questions you know to ask, as your attorney and your bank account. The catch-22 if you do live in a very good school district? There is a good chance that anything that goes to due process is going to take a LOOOONNNNNGGG time. And think about that for a second. If there is a FAPE violation and it works its way all the way up to a due process hearing doesn’t that seem counterintuitive for your school district to allow little old you to go to court with them? Wouldn’t it make more sense to fix the problem as it would be much cheaper and less time consuming to do so? It’s not. At least not to them. Because no matter how much the school doesn’t want to throw money at something they can still probably afford to pay a better attorney for much longer than you can. And besides…the year and a half it could take…perhaps that child won’t need what it was you were asking for by then…or make your life complicated enough that you will break and succumb. That seems like a pretty good gamble for a district. And then it doesn’t set a standard for other families to ask for the same.

The last 25 years have been interesting ones for the education system as a whole. When the parents who walked before us clawed and fought and struggled for these laws it was at a time before the internet, before all the revisions, before standardized testing existed in the way it did, before No Child Left Behind and before Autism was 1:68. IDEA is necessary no matter how you slice it, however it exists in a very different system than it did in 1990. At this point I know a lot of the law like the back of my hand and the parts I don’t know I am now educated on how to find those rules. I have a list of socio-emotional goals for almost every developmental issue at my finger tips and I have an entire community of people going through the same struggles I am at the click of a button day and night. All of this has been achieved through this tiny-huge world we have online. I know exactly the gap closure between special education kids and regular ed kids not only for my district, but for my school. I know the 6 payment tiers that exist and the formula used to calculate how much extra funding my district for each of my kids for using special education services. I know what belongs where on all 13 sections of the IEP and how to make a goal measurable. And I know when I am being BS-ed by my district. I don’t know all of this because of my training…I know it because I live in 2016 and any parent with a computer and the desire can learn the same. In 1990, my school district certainly was not expecting 1 out of every 6 children attending (or 15%) to have some sort of developmental disability….or for the Autism rates to be 600% higher. My child’s elementary school currently has about 700 students and about 100 IEPs (last I heard)…all while serving about 29% of their students as English as a Second Language with limited proficiency. Teachers are stretched thin. Inclusion and LRE are so important for our kids future, yet most regular education teachers were not taught the basics on how to include and teach special ed kids in differentiated instruction or how to manage a classroom where there are multiple children with conflicting accommodations. (ie: When Johnny gets stressed, he can crumple paper…but Jimmy’s auditory sensory integration issues make it impossible to keep it together when he hears paper crumpling….). Parents are communicating, educated and knowing the legal hoops to jump through if their children’s rights are being violated. It is a system that cannot hold itself up and still serve our most vulnerable children to be the most successful they can be. Parents…please keep fighting for your kids….keep learning everything you can. Educators…please do the same. I do not have the answer….I am just hopeful it is found before my children have to move on from the “protective bubble” of IDEA and there are no grown up IEPs.